Tag Archives: spinal injury

Surviving the Storm Eight Months On: My Battle with Concussion & A CSF Leak

A day.
A moment.
An accident.
8 months ago.
When things went wrong for a season.

A fall.
A brain injury.
An undiagnosed spinal injury.
Months of craziness.

This is my update.

It’s for those who know me and it’s for those who don’t. I know some of you are finding these blog posts by searching online.

I want to tell you my story. In the hope that it helps you. Perhaps your own story involves injury and illness, brain or spinal injury. Or maybe it involves another type of storm.

We all face stormy seasons in our lives.

Life is a journey of discovery. We are constantly learning about ourselves and what is around us.

Self awareness is an important part of our growth. My husband and I are on a constant journey to understand life better: Why do we do what we do and feel what we feel? What is our purpose in life and how do we live it out?

We then hope what we learn might help others too.

The journey of self awareness is a humbling journey and yet it is a healthy journey. It helps us to process and break free from thoughts and behaviour that seek to control us.

The past 8 months have been one of the most intense personal journeys of growth I have experienced. As I wrote in Surviving the Storm Six Months On, I have come face to face with many of my weaknesses. Which has been hard and painful, but also a journey of discovering new strength.

wolken

So 8 months on.
Where am I now?

I would love to say that everything is fine. That I have made a full recovery and we can leave it all behind us.

But that is not the truth.

At this moment, I am writing this post lying flat, which still forms a significant part of my day. I was up at 6am, as it was the kids first day back at school. I rushed about getting them ready, dropping them off, shopping, sorting, cleaning etc. Then by about 10am I recognised that I needed a bit of ‘down time’ to ward off symptoms and to pace myself through the day.

If you have read my previous posts, know about CSF leaks or have spoken to me about it, you will know that the postural side of the injury is a key part of it.

Basically when you have a CSF leak, your spinal fluid leaks either from your skull or from the part of your spine that holds the spinal fluid.

We never located my leak on the various scans I had, but we assumed mine was probably a spinal leak. This means the spinal fluid leaks into your body from a tiny hole or tear in the membrane that surrounds your spinal cord.

This results in ‘brain sag’. The brain lacks the support of the spinal fluid and so drops in your skull when you are upright (either sitting or standing).

This causes various problems. The most reported symptoms are severe headaches and neck pain as everything gets squashed and stretched inside. But there are a multitude of other symptoms.

One of the key ones for me at first was severe dizziness and major balance issues (I could hardly walk without support for almost 3 months). This is so much better but still manifests as a spaced out/ cloudy feeling quite a bit.

I was diagnosed with a CSF leak about 8/9 weeks after my initial fall off a ladder (following an initial post concussion diagnosis). After finally being admitted to hospital with various symptoms, about 18 days lying flat in a neurology ward, having 3 MRI scans, which were inconclusive, and a lumbar puncture, which showed low pressure spinal fluid – I had a blind epidural blood patch. (They take blood from your arm and inject it into the epidural space in your spine, in the hope that the clotting helps to heal the leak and increase the spinal fluid pressure. Mine was a high volume blind blood patch, because they couldn’t find the leak on MRI scans, which is not unusual. If they know where the leak is then patches are often more successful).

All this treatment had a significant positive impact and, as I wrote in my first Surviving the Storm post, it brought a sense of normality back to my life. I could spend much more time upright. I was able to do most things and thankfully could drive again (although I stick to short journeys at present because my head can still cloud over at times).

Since then there has been a general gradual improvement.

However,

I am still not back to where I was pre-injury and that is a challenge. I have days that are better and days that are more difficult. But the persistent symptoms are still a daily battle.

I have had to develop new routines that involve regular ‘lying down flat’ breaks. Often these are around lunch time and in the evening, although it varies a lot as I try and preempt what I need to do and lie down before and/or after going out.

I tend to find evenings harder generally. So on busier days I often spend a lot of the evening lying flat (either in bed or on the sofa – as long as my head is pretty flat). Less busy or less symptomatic days it is not as necessary.

I feel extremely blessed that in general the pain scale is nothing like it was around the time I was admitted to hospital. Back then it regularly reached 8 or even 10 out of 10 (comparable to having a baby ladies).

These days thankfully the pain is not as severe and takes longer to build up.

It is nothing like any headaches I had ever experienced pre-injury.

It’s more of an intensity, a pressure that builds up in the lower back of my head and in the top of my neck, leaving my neck feeling really stiff and painful and my head full and cloudy.

When I do lie down often that same feeling often drops to the bottom of my spine around where I had the blood patch.

Similar sensation; different place.

One way I explain it to others is it’s like having a really bad head cold and your head is so full of pressure that it’s hard to think and do things. If it’s a particularly bad one I also can feel it behind my sinuses which makes the sensation more head cold like.

This feeling varies in intensity throughout the day. Often, first thing, I feel fine. It then builds up to varying levels depending on what I am doing and how much lying down I have done.

As it builds up, things get harder. I might take some paracetamol or ibuprofen which helps a bit. Caffeine is also proven to help, so I usually get dosed up on that in the mornings.

As it gets worse I tend to go quieter as everything gets harder, both mentally and physically. The pressure, pain and stiffness builds, which is often coupled by a spaced out feeling and still sometimes a bit of photophobia.

Most of the time I will look fine outwardly. But if you see me when it gets really bad you might pick up on a spaced out, distracted, stressed or pained look on my face.

I often try and keep going for a while when I get like this, until I reach a point where it gets so bad I can’t think straight, the pressure and pain builds and I know I need to rest and lie down. I also try and preempt it and lie down before it gets too bad.

When I lie down there is an element of instant relief. I often say to my husband before I lie down I sometimes just feel like I want to go to sleep; you just feel wiped out. But soon after lying down I can think straight again, my head gets clearer and the pressure eases.

(This was often the way it was at the start, following my injury. I found I could have decent conversations with people if I was lying down. But I didn’t last very long and often couldn’t think straight for very long sitting or especially standing or walking).

The current physical symptoms vary in their intensity on different days, depending on how busy or strenuous the day is and even what time of the month it is (yes ladies it gets worse then!)

During the recent summer holidays things generally seemed better. I felt I had more energy and perhaps needed to lie down a bit less. It helped that I could take it easy in the mornings, lie in bed for longer and add in breaks where necessary.

This summer we have done a lot of clearing out and sorting thorough stuff, which I wrote about in my last post. That kind of work is quite physically demanding so I would rest more at the start of the day and then by the end of a day I usually had to lie down more.

It’s all about managing your time and energy reserves. I also spend time praying and getting encouraged with great words from the bible and other quotes. This helps keep my thoughts together and focus on good things through the tougher and more frustrating days.

wolken
Storms come.
Life goes on.
We cannot wallow in the challenges or they will swallow us up.

I have been getting better and I want to hold onto that and keep believing for complete healing and freedom from this storm soon.

The storm has calmed but it has not yet fully passed. You learn to live with it to an extent and yet I also choose to believe it will fully heal in time.

My faith encourages me to not live life defeated or deflated. Hope always drives us forward. Even though it can be a humbling process balancing belief and reality.

I am deeply grateful for all the health and healing already attained and the sense of normality it brings.

Most of all I am thankful for the good that my experience will bring. There are always positives to be found, even in hard times. Even the darkest times can be used for good.

Whatever your unique storm:
Never let go of hope.
Never stop believing.
Never stop seeing the good, even when it’s painful.

Perspective is vital.

There is always something to be thankful for.
There are always others worse off than you.
We all suffer and feel pain in one way or another.

As a popular saying goes:

“Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.”

I have decided that I will always find the ways and means to dance through life, even in the midst of the rain.

It’s not always easy, but it is the only way to live and thrive through both the ups and the downs of life. It is the only way to find the strength to survive the storm when it hits.

This is my story of a unique season in my life. A storm that has come, that is passing but is taking its time to fully leave.

I don’t know what storms you face? An injury, illness, relationship breakdown or bereavement? Perhaps your prognosis is much worse than mine? Maybe your storm is hidden from view?

But there is a way forward:

We can learn how to dance in the rain.
It is the only way to thrive in the midst of the storm.


I would love to hear about your stories and experiences. Please do leave a comment below or on my social media links.

You can read the first post about my injury here and my six month update here. I usually write my blog posts on my iPhone during my ‘lying flat’ times. Initially following my injury I could not even look at a phone or computer screen for more than a few minutes without feeling exceptionally ill. I am very grateful to be able to do this now.

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.


Surviving the Storm Six Months On: My battle with Concussion & a CSF leak

This post is a follow up post to Surviving The Storm: My Battle With Concussion And A CSF Leak that I wrote 3 months ago.


Life is a journey through different seasons. Seasons of celebration, happiness and success and seasons of loss, pain and frustration.

Sometimes unexpected things happen and life changes in an instant. Sometimes that change is temporary. Sometimes permanent. But it always brings a season of adjustment with it.

At the start of 2015 my life was going along normally. It was the start of a new year; a new season; a new time.

Then I had an accident.

In many ways, it was just a small accident. In an error of judgement I put a small step ladder on an uneven surface whilst painting. I painted with it there for hours, then in one moment the ladder toppled over and I fell.

One mistake on my part. And one I have paid for over the past six months.

We all make mistakes every day. Often the consequences are minimal. Then a day comes when we make a mistake that has bigger consequences.

We can’t change what happened.
We can only learn from our mistakes.

That journey is never easy.

When I fell, I hit my head, back, neck and arm. It was a blunt but forceful impact to my lower head and although I felt the impact and felt slightly dazed, in general I actually felt OK.

So I did what I always do: I got up and carried on.

I even joked to others about falling off that ladder – oblivious to what had actually taken place.

Then as I wrote in Surviving the Storm, over the next week my injury caught up with me and everything began to unravel.

Grunge Background

Brain injuries like concussion, post concussion and CSF leaks are tough. They are difficult to fully diagnose and yet so debilitating. Your brain is like mission control to your whole body and when your brain gets rattled or strained so many things get out of sync.

I am one of the blessed people whose injury, although serious, was comparatively mild. Severe brain injuries are life threatening and permanently life transforming. I am so very thankful that it was no worse.

However,

It was and still is a storm in my life. It was debilitating. It changed my life for a time. It is still improving but it has not yet fully passed.

Four or five months ago, at its worst, the only way to ease the symptoms was to lie flat and do nothing. For hours, days and weeks on end.

Have you ever tried that?

Doing nothing but lying flat in a dark room.

It can be torture. Especially when you are dizzy and in pain.

I was then finally admitted to hospital 8 weeks after the initial injury. Although tough in itself, I was thankful for this, because we got some answers and I was finally diagnosed with a CSF leak (cerebral spinal fluid leak).

Many people will not know that after a few days in hospital I faced one of the darkest days in my life.

Some events took place that probably during an average day I would have coped with and managed mentally and emotionally a lot better than I did.

But on that day a pattern of events unfolded that involved a senior hospital staff member with an exceptionally bad attitude.

And it totally floored me.

I have never felt so utterly weak and helpless. I was in so much pain, was mentally impaired by the cloudiness and dizziness, and faced a very unpleasant situation that I was powerless to deal with.

Those two days (because things got worse before they got better) were probably two of the the hardest days of my life, in many ways.

I have never felt so desperate, so weak, so intimidated and so vulnerable.

I cried a lot that day, desperately and deeply (in a hospital ward full of other people).

Have you ever come to the end of yourself?
When you have no strength left physically or mentally.
When you feel desperately vulnerable.
When you can’t fight any more.
When you don’t know what to do.

At its worst my injury left me in severe pain and my body would start shaking violently in response. As this happened my mind would cloud over and take me into a drunk-like state.

You can’t think straight, struggle to talk, can hardly stand and walk, and it can be quite distressing.

You feel immensely vulnerable and it was in my vulnerability that I faced this intimidating situation that I couldn’t deal with alone.

In that moment I thank God so much for people who loved and cared for me. There was a wonderful nurse at the hospital who reached out to me in my desperation with compassion and understanding. My church family had already dedicated a week to praying for me and they fought for me spiritually in my dark hour.

My husband was at a pre-planned family gathering with my girls that day (over 2 hours away). It was to celebrate my Mum’s birthday, in her remembrance (just over a year after her death). He dropped everything to leave, earlier than planned, and got to me as soon as he could (about 3 hours later).

In my darkest hour I was physically and mentally wrecked and alone, and yet I did the one thing I could: I reached out to God in the midst of my desperation. 

I knew that He would carry me.

When there was nothing left of me I knew He would hold me.

When I felt the most vulnerable I had ever felt, I knew I had advocate who was fighting for me.

And that is what got me through. Believing, hoping and trusting that things would get better.


I have never felt so desperate, so weak and so vulnerable.


CSF leaks can be very hard to fix. There is still a lot of uncertainly about the best ways to treat them. After two and a half weeks in hospital I ended up having a blood patch (where blood is injected into the epidural space in your spine) which helped a lot, but it certainly didn’t solve everything.

I again had to decide to hold onto my hope and have faith that it would get better. And things have got better. A sense of normality returned, but even 6 months on life post-injury is still a challenge in many ways.

I still can’t do everything I once did.

And that is hard.

As I shared in ‘Is Busyness a Choice?‘ I was a busy person. One of those people that always had a lot on and did a lot of rushing about.

But at the moment I still can’t rush about like I used to.

And it is SO frustrating.

I still have to sit and lie down at regular intervals. Especially when I have a lot on.

I often feel lightheaded, my head gets cloudy and a spaced out.

Life takes much more effort. Which is a mental, as well as a physical challenge for me.

I am a doer, a get up and get on type of person, but my body won’t always let me do that at the moment.

When your energy levels are low, everything becomes so much more difficult. The things you have to do become that much harder. And even your mental processing becomes impaired. These are all things that I still have to battle through daily.

I have to have wisdom to work out my days. If I know I have a lot to do I need to make sure I have clear rest points in the day, both before and after the activities I need to do.

It is manageable.
But it is frustrating.

And yet despite all these challenges I have learnt and grown so much.

I have so much more empathy and awareness of people with health issues. I hardly ever used to get ill, so my experience of battling this has given me more compassion for people who are struggling with injury and illness.

I have had to develop a longer term perspective so as not to get overwhelmed with the daily challenges. I have to see the bigger picture. 

I have had to learn to say no to doing too much, allow other people to help me, and tell people when I am struggling. Which doesn’t come easy to me because I fight against self pity at all costs and do not enjoy being a victim.

Life has been more frustrating.
I have faced increased feelings of discouragement.
But I have certainly become more self aware and developed more humility.

The last six months have been tough in many ways.
However,
I believe we can never give up or lose hope.

Without hope we have nothing to live for. It is always faith, hope and love that give us confidence for the future.

I have faced my own vulnerabilities and weaknesses like never before. And more than ever I know I cannot rely on my own strength to keep going and do all I am meant to do.

But that is not a bad thing.

Coming face to face with your own weaknesses and vulnerability can be a good thing.

In the Bible God said this to the Apostle Paul when he was struggling with his own weaknesses:

“My grace is sufficient for you, for my power is made perfect in weakness.”

Paul then wrote in response:

“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-11.

When I feel weak, I realise that I can’t ‘do life’ on my own. I realise that I don’t have the capacity and strength alone to face the challenges that life brings. But I do know God will work His power in and through me…. regardless.

That is grace.

The Almighty God uses us fragile humans in our weakness and vulnerability and makes us strong in His power.

When I come to the end of myself I have no where else to turn but God. It is then that God’s power works in and through me in the most beautiful way.

Because when you come face to face with your fragility you understand that we are all the same.

We are all human.
We all have struggles.

It is then, as God shows us His love and grace in the midst of our own struggles, that we can show love and grace to others in the midst of their struggles.

That is the power that works within us.
The power of love and the power of grace.

It is the mystery of God.
The divine paradox.

That weakness brings strength.
And that strength is spelt LOVE.

And love and grace are all you need!

So that’s my journey of surviving my unique storm. It is still not over, but writing this post has been helpful for me in looking back over the past six months, remembering, learning and growing towards the future.

This post has, in all honesty, been written through tears as I attempt to share some of the darker realities and vulnerabilities of my journey.

However, what I do know is that these dark days are not without purpose. They have been used to strengthen me and they will be used to help others.

There is always new strength to be found in weakness. Sometimes the journey to finding it will be painful.

But it is always there to be found.


How do you find strength in weakness?


Comments are always welcome below or on my social media links. 

You can read the first post about my injury here. I have also since added a new 8 month recovery post. I then go on to write about my ongoing story of relapse at 9 months and on to rebounding into High Pressure CSF at the end of the year all these posts can be viewed under the CSF Leak and Concussion menu choice at the top of the screen. 

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

This post was inspired by my last post called ‘Breaking Free! From Pretense’.

Surviving the Storm: My Battle With Concussion & A CSF Leak.

‘The longer I live the more I realise the impact of attitude on my life. Attitude to me is more important than failures or successes, than what people think, say or do, it is more important than appearance, giftedness or skill. The remarkable thing is that I have a choice everyday as to the attitude I will embrace and I am convinced that life is 10% of what happens to me and 90% how I react to it.’  – Charles Swindoll

It’s been a while since I wrote on this blog. In fact, only a few days after I started the blog, I had (what I considered at the time) a little accident and fell off a step ladder and hit my head, neck, & spine as well as sustaining some other minor bruises.

The end result of this little fall was two and a half months of, at times, severe symptoms which were diagnosed by various medical professionals, firstly as Concussion, then Post-Concussion Syndrome & Whiplash and finally, about 3 weeks ago, I was diagnosed in hospital by neurologists as having a spinal CSF (Cerebral Spinal Fluid) Leak. (This is a tear in the membrane that surrounds your brain and spinal cord. It results in the spinal fluid leaking out and absorbed into your body, reducing pressure and causing your brain to drop in your skull.)

I am not sure we really fully know which of my symptoms could be attributed to what diagnosis, at what point. However, in the end, the CSF leak seemed to fit many ongoing symptoms, a lumbar puncture confirmed ‘low pressure’ spinal fluid and I received treatment for this which helped a lot. (This included an epidural blood patch following over 2 weeks of lying flat in hospital whilst taking caffeine supplements & pain relief).

In short I had battled for weeks with an array of symptoms which included:
Severe dizziness
Lack of balance
Pressure headaches
Severe head and neck pain
Cognitive (thinking) impairment
Sensitivity to light and noise
Nausea
Body shaking and spasms
Struggling to walk very far (and only with support)
Struggling to talk at times
A constant need to lie down flat to alleviate/ ease symptoms. (typical of a spinal CFS leak).
Exhaustion of body & mind

Over the last 11 weeks I saw multiple NHS doctors & consultants, nurses, physios, had 3 trips to A&E, one ambulance to the house, a two and a half weeks stay in an NHS neurology ward, a CT scan, X-rays, 3 MRI scans, (all inconclusive) 1 lumbar puncture and 1 epidural blood patch.

I am currently still on the journey of recovery and building up my strength. Not fully back to normal and still have to lie down at times during the day, especially in the evenings, but I am so much better than I was.

It’s certainly been a challenging 11 weeks which totally disrupted my, and my family’s, normality. I spent 22-23 hours a day, for the first couple of months, lying in bed in a dark room, mostly on my own, doing very little and then two and a half weeks in hospital lying flat as much as possible whilst I waited for various tests and procedures.

Grunge Background

After starting my blog in January, the third blog post I wrote was about Perspective: Stepping Back From The Detail To See The Bigger Picture. I wrote about how our perspective is really important and how we sometimes we need to step back from the details to see the bigger picture. I spoke about how sometimes it’s not circumstances that need to change but the way we see what is happening. Sometimes we have to choose to see things differently, we have to see with new eyes.

Who could have known that the words that I wrote at that time could be so significant for me in the days, weeks, and even months after I wrote them. Sometimes it’s our own words that become powerful in speaking back to us. The words we say or write in one season of our life becomes so applicable to another season of our life, in a new way.

So over the past few weeks I’ve learnt a lot about perspective. Many hours, of many days, I’ve had to step back from the detail to see the bigger picture. I have had to step back from the symptoms to get a larger perspective.

Some days you have to fight for a better perspective.
Sometimes you have to push your way through the details to gain a better understanding.
Sometimes you have to step back from the circumstances and choose to change your attitude.

Especially when things can be:
Scary
Unknown
Different
Exceedingly frustrating
Exhausting

When you can feel:
Very unwell
Naive
Helpless
Weak
Uninformed
Mentally impaired

When the new season requires new:
Patience
Endurance
Wisdom
Strength
Faith
Determination

Grunge Background

The past number of weeks again opened my eyes to new perspective. I can’t recall in my life ever being ill for more than a few days. I’ve never had a brain injury before and I really didn’t know a lot about them. I now have a much better understanding, and a better perspective of people who experience them and similar things.

The challenge of mild traumatic brain injuries, is that they are often unseen. They are not a visible injury. Concussions, whiplash, and often CSF leaks, don’t appear on normal CT or MRI scans so it creates problems in diagnosis, all you have is the symptoms to go on.

It’s a humbling process as you try and work your way through the symptoms, often having to rely on the information you seek out yourself, to work out what on earth is wrong with you and how to get the right treatment. It’s a challenge when you are diagnosed with something that people don’t know a lot about. When your illness or injury is not fully tangible, yet so debilitating, and can often only be diagnosed by the symptoms that you experience and have to try and communicate to medical professionals.

So it’s been a season of learning.

Challenge and hardship are often a place we grow, a place we learn, a place we develop. If we choose to approach them in the right way and with the right perspective.

The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.
The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.

Sometimes:
We just have to be patient.
We have to keep walking through the storm and trust the calm will come.
We have to face the challenges of life and then use what we learn to make us stronger and help other people.
We have to keep holding on to hope without knowing all the answers.
We have to fight to stay thankful and see the positives within a difficult time.

It’s all about having the right perspective.

It’s not easy.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective and step back from the details of your circumstances.

When I stepped back from the detail in my situation, I could see that it could have been worse. Yes this accident interrupted my life, yes it was frustrating, a real challenge. It totally changed my life for a number of weeks and months. However, I had so much wonderful help and support from my family and friends. I have learnt so much and gained a better perspective and more appreciation of life. And I am now coming through my storm, I am doing well in recovery and I am getting back to some kind of normality day by day.

There is never any point in wasting energy on the ‘why me?’ or ‘what ifs?’ A negative mindset, looking backwards or forwards, just destroys you from the inside out. Even amidst very difficult times there’s always something to be thankful for and others worse off than you. I always chose to believe that my storm would pass (even when I seemed to be getting worse rather than better), others don’t have that blessing, the storm just gets worse and doesn’t go away.


Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective.


So again, with new insight, I say that so much is linked to perspective. We can choose to see the positives or become consumed by the negatives in our lives. We can choose remain thankful for the good things, even when we are going through a dark time.

Often it’s not the circumstances of our lives that need to change. It’s our perspective, it’s our attitude, it’s the way we ‘see’ and think about our life.

Sometimes we need to step back from the detail to see the bigger picture. We then realise that often the storms in life come and go. And with the right attitude and a hopeful perspective we will come through it:
a little stronger,
a little wiser,
a little more thankful for daily life,
and have a little more compassion for others.

It’s all about perspective!

I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

Lets keep asking ourselves: What parts of our own lives could we see with a more positive perspective? Self awareness is always the first step to personal change.


I have now written two update posts about my recovery journey at 6 months and at 8 months; I then have a series of posts about a relapse at 9 months  when it was decided that I probably never had a concussion and all my symptoms could be attributed to a spinal CSF Leak

To read more about my 20 months on story of living with a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

Click here to read more about my spinal CSF leak recovery following my 4th blind lumbar 40ml epidural blood patch in September 2017 and subsequent ‘rebound into higher CSF pressure/ hypersensitivity to higher pressure’ following that treatment. 

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospitals.

To find out more about Concussion and Post Concussion this video is a great resource: Concussion Management